Marije Brouwer, MA,a, b Christopher Kaczor, PhD,c Margaret P. Battin, MFA, PhD,d ShouldEls Maeckelberghe, PhD, Pediatrica John D. Lantos, MD,e Eduard Euthanasia Verhagen, MD, JD, PhDb be Legalized? abstract Voluntary active euthanasia for adults at their explicit request has been legal in Belgium and the Netherlands since 2002. In those countries, acceptance of the practice for adults has been followed by acceptance of the practice for children. Opponents of euthanasia see this as a dangerous slippery slope. Proponents argue that euthanasia is sometimes ethically appropriate for minors and that, with proper safeguards, it should be legally available in appropriate circumstances for patients at any age. In this Ethics Rounds, we asked philosophers from the United States and the Netherlands, and a Dutch pediatrician, to discuss the ethics of legalizing euthanasia for children.
Voluntary active euthanasia for to discuss the ethics of legalizing adults at their explicit request euthanasia for children. aInstitute for Medical Education and bDepartment of Pediatrics, University Medical Center Groningen, University has been legal in Belgium1 and the The Case of Groningen, Groningen, Netherlands; cDepartment of Netherlands since 2002. Euthanasia, Philosophy, Loyola Marymount University, Los Angeles, voluntary or nonvoluntary, remains California; dDepartment of Philosophy, University of Utah, Salt Lake City, Utah; and eChildren’s Mercy Hospital, Kansas illegal in the United States, although Adults and children of 12 years of City, Missouri several states have legalized age and older can legally request physician-assisted aid in dying for euthanasia in the Netherlands under All authors contributed to the design of this article, the drafting of the manuscript, and the review of adults. No US state permits assisted the 2002 Euthanasia Law. Requests for the manuscript and approved the final version. dying or euthanasia for minors. euthanasia often come from patients DOI: https://doi.org/10.1542/peds.2017-1343 Opponents of assisted suicide and experiencing unbearable suffering euthanasia often claim that the with no prospect of improvement. Accepted for publication Apr 25, 2017 legalization of such practices for Their requests must be made earnestly Address correspondence to John D. Lantos, MD, competent adults will begin a slide and with full conviction and are only Children’s Mercy Hospital, 2401 Gillham Rd, Kansas City, MO 64108. E-mail: [email protected] down a slippery slope, leading to the honored if patients and their doctors legalization of voluntary euthanasia see euthanasia as the only escape PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275). or physician-assisted death for from the situation. Acts of euthanasia patients who cannot consent. are reported to the Ministry of Health Copyright © 2018 by the American Academy of Pediatrics In Belgium and the Netherlands, and are reviewed to ensure that they comply with the law. In addition, since FINANCIAL DISCLOSURE: The authors have acceptance of the practice in adults indicated they have no financial relationships has been followed by acceptance of 2005, neonatal euthanasia for infants relevant to this article to disclose. <1 year of age has been permitted by the practice for children. But is that FUNDING: No external funding. a slippery slope, and is it necessarily a policy known as the 2005 Groningen Protocol. POTENTIAL CONFLICT OF INTEREST: The authors a bad thing? Proponents argue that have indicated they have no potential conflicts of euthanasia is sometimes ethically In the past 10 years, 2 cases of interest to disclose. appropriate and that, with proper neonatal euthanasia were reported, safeguards, access to it should not be and in the last 15 years, 7 cases of To cite: Brouwer M, Kaczor C, Battin MP, et al. limited by age. Others disagree. In this euthanasia in minors between 12 and Should Pediatric Euthanasia be Legalized?. Pedi Ethics Rounds, we asked philosophers 18 years old have been reported. The atrics. 2018;141(2):e20171343 from the United States and the majority of cases concerned children Netherlands, and a Dutch pediatrician, with terminal cancer. All cases were Downloaded from www.aappublications.org/news by guest on September 28, 2021 PEDIATRICS Volume 141, number 2, February 2018:e20171343 Ethics Rounds retrospectively assessed by a but certain side effect. Although it the end of life, especially those who multidisciplinary review committee is true that increasing the dosage choose not to kill themselves. and considered appropriate. Nobody of the sedatives may be necessary “ ” was prosecuted. over time to continue to relieve Moreover, euthanasia is not properly suffering, relieving suffering in this Dutch pediatricians and several described as relieving suffering. way is ethically permissible, even parent groups have argued that A suffering person who is relieved if death as a side effect occurs. (For severely ill children between 1 and of suffering is in a position to more on why this distinction is 12 years of age and their families are ’ experience the relief of suffering. But legally and ethically important, see denied access to the same provisions Euthanasia Examined a person who is killed is dead, and the legal philosopher John Keown s as newborns and older children so such a person no longer has any , Cambridge without good reason. They suggest bodily experiences. The corpse of a University Press.) reevaluation of the current legal person who has been killed neither situation and propose to extend the All people of good will agree that we feels pain nor the relief of the pain. A newborn regulation to all children should alleviate suffering. It is the corpse feels nothing. Indeed, human who are 1 to 12 years of age. The legalization of euthanasia and its beings who are killed no longer exist Minister of Health is considering expansion to new classes of persons, at all, so euthanasia does not relieve transformation of these propositions not its criminalization, that hampers their suffering. into new regulation. achieving this goal. If we kill patients You are asked to advise the Minister rather than relieving their pain, the Moreover, most philosophers draw practice of euthanasia undermines of Health. What advice would you ’ an important distinction between the practice of palliative care. Why Christophergive? Kaczor, PhD, Comments voluntary and nonvoluntary worry about alleviating someone s euthanasia. In voluntary euthanasia, pain, when we can simply kill the a competent patient chooses to die on person? The more people who the basis of his or her own evaluation I would advise the Minister of Health choose euthanasia and the more of his or her life. In nonvoluntary not to expand the range of cases in euthanasia is nonvoluntarily imposed euthanasia, no such consent is which intentional killing of innocent on patients, the less incentive given. Children <12 years of age are human beings is permitted by law. there is to improve methods of incapable of giving informed consent Defenders of the Dutch law palliative care. The more physicians for meaningful life decisions. For this permitting intentional killing practice euthanasia, the less these reason, we do not permit children of infants as well as adults and physicians practice relieving pain. <12 years of age to consent to their children 12 years of age and older The more people there are who “ own sterilization, to vote in elections, presuppose an empirical claim: die of euthanasia, the fewer people to join the military, to get married, ” ’ killing a person is the only escape there will be who demand greater or to have sexual intercourse. The from the situation of unbearable palliative care. If demand for choice to end one s own life or ’ suffering. This claim is false. Terminal palliative care is dampened, there is to authorize another person to sedation is a contemporary technique less financial incentive for developing end one s own life is much more of palliative care in which a person new methods of alleviating pain. The serious than the choice to join the who was suffering is relieved of pain more euthanasia is expanded, the military, to get married, or to have entirely by the continuous infusion less pressure there will be to improve sexual intercourse because those ’ of sedatives that entirely relieve palliative care, because killing will be decisions can be reversed and do not all pain. Terminal sedation can be seen as a simpler, cheaper option. completely change an individual s administered to infants, children, or Perhaps worst of all, expanding life in every respect. Current Dutch adults who are suffering and cannot the scope of legalized euthanasia law does allow for nonvoluntary be cured of their disease. If we care undermines compassion for those euthanasia of infants, an allowance about suffering people, let us relieve “ who suffer. Some people will think, incompatible with the principles of their suffering rather than killing or even say, Euthanasia is legal, justice because such infants do not them. but this person did not choose it. consent to have their lives ended. If Eventually, terminal sedation leads If she is refusing euthanasia and is all persons are to have equal rights to death. Over time, the dosage of choosing to suffer rather than die, and deserve equal protection of the that is her problem. Why should we law, then disabled persons (whether sedatives must be increased. At a ” certain point, the dosage may be so help her when she is not even helping they are infants, children, or adults) high that the death of the patient herself? Legalizing euthanasia deserve the same basic protections may be foreseen as an unintended endangers and undermines those at from intentional homicide. Downloaded from www.aappublications.org/news by guest on September 28, 2021 2 Brouwer et al Margaret P. Battin, PhD, Comments
That allowing this practice would understanding, and the willingness lead to wholesale killing of children to help someone who wishes to avoid My Dear Minister of Health, 1 to 12 years of age. otherwise intolerable suffering. I mention this only because readers in Thank you for asking for my input That it is always wrong to end a other countries might come across on this important topic. As you may life. (Proponents of this view this letter and misunderstand the know, I have long been an advocate would need to address situations decision you are making. for legalized aid in dying in the – such as killing in war, killing in United States and have published 2 4 self-defense, killing in defense of So, dear Minister, please be as clear a number of books on the topic. others, and [more controversially] I generally support your proposed as you possibly can that you are only capital punishment; they would legalizing euthanasia in the Dutch change in Dutch law governing also need to oppose current laws eligibility for euthanasia. Given that sense. That is, you want to permit in the Netherlands that allow the ending of life in a way that, given euthanasia is currently legal for ≥ ’ euthanasia for children <1 year of the unbearably sad circumstances of infants <1 year of age and children “ ” age and adults 18 years of age.) a child s dying, can make it gentler, and adults >12 years of age, I believe ’ that opponents would have to show That euthanasia is the same as easier, and more humane for both the evidence that at least 1 and perhaps (wrongful) killing and doesn t refer child and for the parents in whose many of the following propositions to helping someone who is already arms you can help that death to ’ are true if they are to persuade you dying die in an easier, gentler way. occur. not to support this change in the law: That God wouldn t want physicians In sum, I urge you to accept the ’ and parents to help dying children ’ That children 1 to 12 years of age proposed changes to the regulations. in this way. don t die. There s no good argument against ’ My dear Minister, if there is doing so and plenty of good reasons That children 1 to 12 years of age no evidence to support any of to say yes. don t die badly. Marije Brouwer, MA, Els these propositions, then the case Maeckelberghe, PhD, and Eduard That most prognoses of death in against extending the age limits of Verhagen, MD, JD, PhD, Comments children 1 to 12 years of age are eligibility for euthanasia is not very wrong, so that the law would lead strong. These questions concern to deaths in children who would error, abuse, religious objections, We would advise the Minister have survived. ’ consistency, informed consent, physician integrity, and complacency of Health to consider removing That parents aren t harmed by seeing about the suffering of a child, all the age restrictions from both the their children suffer. usual objections that are made. I have Euthanasia Regulation and the ’ Groningen Protocol. This would make That parents would never allow this; trouble imagining other ways that euthanasia accessible for competent they d rather see their children opponents of this extension could and incompetent children who suffer suffer. make a case at all. unbearably when there is no other That pediatricians are in general But there is, of course, another way to relieve their suffering. It problem, and one that is not more interested in their own “ ” would show trust in mature minors, pocketbooks than in the welfare of evidence-based. The word parents, and doctors to make the their patients. euthanasia carries important right decisions. However, before baggage. Thereeu-thanatos in the Netherlands, implementing our recommendation, That pediatricians would be you generally understand it in the “ ” we would urge the Minister to initiate corrupted and find it easy to ’ Greek sense, , by which research to monitor and analyze how terminate the lives of patients they it literally means good death. But euthanasia is being used. couldn t cure. ’ here in the United States and in much of the rest of the world, we Our advice to remove age That pediatricians can t understand hear euthanasia with overtones restrictions is in line with important the difference between killing of Nazism; the term euthanasia Dutch values. We believe in self- a healthy, curable child and evokes that horrifying legacy of determination, as manifested by the hastening a bad death that is political killing that had nothing to voluntary request that initiates the already in progress. do with the interests of the person procedure, and in the beneficence That pediatricians would end the killed. For you in the Netherlands, of physicians to end unbearable lives of children no matter what in contrast, euthanasia is a term suffering when there are no other the parents said. that connotes mercy, compassion, options. Downloaded from www.aappublications.org/news by guest on September 28, 2021 PEDIATRICS Volume 141, number 2, February 2018 3 Self-determination, Parental Determination, and Beneficence incompetent patients who also might unbearable suffering in children, suffer unbearably is not limited to the we can obtain a more experience- age of 12 but encompasses patients based understanding of it. Specific We believe that the current legal Researchof all ages. (anonymized) cases should be made age limit for euthanasia needs to be available to researchers. revised. The current law connects the mental competence necessary We would stress that our Fourth, we need to scrutinize the for a euthanasia request with a fixed recommendations should be legal and moral complications of the age: 12 years. This age limit, however accepted only in conjunction with notion of parental determination. Are practical it might be, is arbitrary. a requirement for further research. there limits? What happens, in those It excludes children capable of There are at least 5 reasons why rare cases, if parents seem to be discernment at an earlier age. There we would need to obtain accurate considering their own needs rather is evidence that some children up data before we make any permanent than the needs and interests of the from the age of 8 are competent to change in the existing regulation. child? Again, detailed case studies make complex choices regarding 5 would help. their treatment. The right of self- First, in contrast to the extensive determination, one of the 2 core data about end-of-life decisions for Fifth, we need to better understand values of euthanasia, knows no age newborns and patients >12 years old, the problems that parents and limit. there is hardly any research on end- of-life decisions in the age range of 1 physicians currently face in end-of- Second, we need to consider that to 12 years. We need to know what life situations. This will help us to many children lack this mental care is provided, which decisions are understand the current demand for competence. For them, the pediatric euthanasia. In particular, made for these8 children, and how amendment of the Euthanasia Act they died. we need to know whether expert will not suffice. With the 2005 palliative care and symptom Groningen Protocol, the Netherlands Second, because this law would management are available and if has an option of euthanasia for only affect terminally ill children, euthanasia would indeed be the only we would need to study the ways in incompetent 6,patients7 younger than way to relieve the suffering of these 1 year of age. An extension of the which such children make decisions. children. Groningen protocol could provide Are they more mature than healthy a way out for incompetent children children and thus more competent Recently, the Minister of Health, with unbearable and hopeless to make important health-related Welfare, and Sport has made a first suffering. decisions? Or are they particularly step toward acquiring more data vulnerable and immature as a by supporting a research proposal The Groningen Protocol demands result of their illness? There is a for thorough qualitative research, parental agreement. This provides lack of scientific knowledge about in which parents, physicians, and a specific extension of the notion of the decision-making capacities children are interviewed. The aims self-determination that we would and competence of incurably ill of the study are to get a better like to call parental determination. children. We should study that more understanding of the motivations This parental determination is a thoroughly. for and different perspectives on a bridge between self-determination Third, the central notion of euthanasia decision and to collect and beneficence. For a doctor to unbearable suffering needs to be narratives of assessing suffering. act beneficently, he needs to have ’ studied. This will help physicians and These data could be used to make sufficient understanding of the parents make decisions concerning thorough decisions about the child s suffering. The parents provide ’ the end of life. Understanding the amendments in the law and to a specific and necessary perspective suffering of a child is challenging compare end-of-life experiences on the child s suffering, informed by 9 because of its personal nature. before and after the age limit was family values, intimate knowledge ’ We propose to examine the removed. of the child, and their view on the circumstances around death and child s quality of life. This parental “ ” dying in that age group and collect We would add a final bit of advice determination prevents euthanasia ’ data about suffering by using to the Minister, one from the heart: for incompetent children from patients experience and parental please do not only provide legal becoming an out-of-balance decision observations. Although an objective possibilities but also ensure optimal only based on beneficence. description of suffering is out of support and care for parents, We would cautiously remind reach, by collecting experiences children, and physicians who face the Minister that the group of from people who encounter such a decision. Downloaded from www.aappublications.org/news by guest on September 28, 2021 4 Brouwer et al John D. Lantos, MD, Comments 5. Hein IM, Troost PW, Lindeboom R, et al. Key factors in children’s competence increasing doses of narcotics. Then, to consent to clinical research. BMC Most philosophical arguments for either their pain will be relieved Med Ethics. 2015;16(1):74 or, in rare cases, the patients assisted suicide or euthanasia focus ’ 6. Ministerie van Veiligheid en Justitie on cases in which people experience go on to13 respiratory failure and en de Minister van Volksgezonheid, death. Children generally don t intractable pain and suffering. By ’ Welfare and Sport. Regulation late- contrast, most people who choose fear becoming a burden to others. term abortion and termination of lives of neonates [in Dutch]. De to end their lives are not motivated They don t worry about the loss Staatscourant. 2016;(3145):1–8 by physical pain. Instead, the most of future autonomy. Because the common reasons people give for circumstances of and rationales for 7. Verhagen AAE, Sauer PJ. End-of-life making the choice to end their lives euthanasia or assisted suicide are decisions in newborns: an approach from The Netherlands. Pediatrics. are fears about the loss of autonomy so different between children and adults, it seems unlikely that simply 2005;116(3):736–739 or a desire10 not to be a burden to others. People who request aid extending the legal framework 8. Dan B, Fonteyne C, de Cléty SC. in dying also have higher levels that is used in adults to younger Self-requested euthanasia for children in Belgium. Lancet. of depression, hopelessness, and and younger people will be either 2014;383(9918):671 672 dismissive attachment (attachment useful or necessary. Instead, the best – to others characterized by approach to the treatment of pain 9. Cassel EJ. The nature of suffering and independence and self-reliance) and suffering in dying children would the goals of medicine. N Engl J Med. 1982;306(11):639 645 and lower levels of spirituality than seem to be better palliative care with – an understanding that, sometimes, 10. Oregon Health Authority. Oregon comparable terminally ill patients11 who do not request aid in dying. such care may lead to situations in death with dignity act: data summary These are situations in which the which good pain treatment hastens 2016. Available at: http://public. health.oregon.gov/ProviderPartnerRe patients' suffering is more existential death. To accept that would not sources/EvaluationResearch/ than physical. In treatment of the require a change in the law. DeathwithDignityAct/Documents/ References existential suffering that arises from year19.pdf. Accessed April 7, 2017 fears about the future, the goal is 1. Legemaate J, Bolt I. The Dutch 11. Smith KA, Harvath TA, Goy ER, Ganzini not to relieve current suffering. Euthanasia Act: recent legal L. Predictors of pursuit of physician- It is to prevent the possibility of developments. Eur J Health Law. assisted death. J Pain Symptom future suffering. Such concerns will 2013;20(5):451 469 – Manage. 2015;49(3):555–561 generally not be relevant to small 2. Battin MP. The Least Worst Death; 12. Verhagen E, Sauer PJJ. The children. For children and babies, Ending Life. Oxford, UK: Oxford Groningen protocol euthanasia in as noted in the Groningen Protocol – University Press; 1994 severely ill newborns. N Engl J Med. for neonatal euthanasia, the focus “ ” 3. Battin MP. Ethics and the Way We 2005;352(10):959–962 of euthanasia eligibility criteria for 12 Die. Oxford, UK: Oxford University 13. Henderson CM, FitzGerald M, Hoehn KS, infants is unbearable suffering. Press; 2005 Weidner N. Pediatrician ambiguity in An infant's unbearable suffering can 4. Battin MP. The Ethics of Suicide: understanding palliative sedation at usually be treated by high-quality Historical Sources. Oxford, UK: Oxford the end of life. Am J Hosp Palliat Care. palliative care. Patients who are University Press; 2015 2017;34(1):5–19 in pain or who have unbearable suffering can be treated with steadily
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Updated Information & including high resolution figures, can be found at: Services http://pediatrics.aappublications.org/content/early/2018/01/05/peds.2 017-1343 References This article cites 8 articles, 1 of which you can access for free at: http://pediatrics.aappublications.org/content/early/2018/01/05/peds.2 017-1343#BIBL Subspecialty Collections This article, along with others on similar topics, appears in the following collection(s): Ethics/Bioethics http://www.aappublications.org/cgi/collection/ethics:bioethics_sub Hospice/Palliative Medicine http://www.aappublications.org/cgi/collection/hospice:palliative_me dicine_sub Permissions & Licensing Information about reproducing this article in parts (figures, tables) or in its entirety can be found online at: http://www.aappublications.org/site/misc/Permissions.xhtml Reprints Information about ordering reprints can be found online: http://www.aappublications.org/site/misc/reprints.xhtml
Downloaded from www.aappublications.org/news by guest on September 28, 2021 Should Pediatric Euthanasia be Legalized? Marije Brouwer, Christopher Kaczor, Margaret P. Battin, Els Maeckelberghe, John D. Lantos and Eduard Verhagen Pediatrics originally published online January 9, 2018;
The online version of this article, along with updated information and services, is located on the World Wide Web at: http://pediatrics.aappublications.org/content/early/2018/01/05/peds.2017-1343
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